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Hey all!
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Hi Paul,
I live in NH and get my care at MGH neuro muscular clinic
I seeDrAmanda Guidon who is wonderful
Best to get care at medical centers
Good luck!
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Thank you.
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I truly appreciate the responses, but my last reply to this thread (a few days ago) is about 10 to 12 posts up and explains that I found a good Doctor and got a diagnosis and am on a treatment path. Thank you,
Paul
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Congrats!
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I just want to say that anyone taking prednisone should tk collagen supplements. I have been taking a lot of prednisone for long. I had a bone density scan a couple years ago and another a couple months ago. Prednisone weakens bone density. So does getting older. My bone density has improved because of the collagen, glue of life. In fact, everyone should have plenty of collagen, which I put in my super charged smoothies.
Best wishes folks, Wayne
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Thank you for the tip, Wayne! My Rheumatologist had me on prednisone for over a year about five years ago, but it was only around 5mg daily. I will add some collagen to my diet. I believe I have powdered bone broth that I intended to use in recipes……
Paul
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You’re very welcome, Paul. Best wishes, Wayne
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Paul. Regarding your double vision issues. BTW this is for anyone else reading who suffers from double vision. Make an appointment with an ophthalmologist. Discuss your MG disease and then ask about putting a prism i to your eyeglasses. If you do not wear eyeglasses then the can put a prism I to clear glass in eyeglasses. The prism is a gamechanger. It immediately corre ted the double vision. Now you probably will get it again when you take your glasses off but I’ve learned to watch TV in bed on a double screen. Please look into prisms. They changed my life.
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Thanks. I’m going to see a Neurologist that specializes in Ocular MG. I’ll post what happens.
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I have to agree that you are seeing the wrong neurologist. I was referred to an opthalmic neurologist after my blood work came back negative. The first never conduction test was positive but then the single fiber nerve conduction was negative for MG. The test that the eye doctor did and said confirmed that I have occular MG is to hold eye packs on the eyes for 5 minutes. It opens the eyes for a few minutes, and then they droop again. She said she has seen negative blood work and negative single fiber test in some cases. I was prescribed Upneeq, but it is very expensive, and over time, it doesn’t work as well. I had eye lift surgery, and that helped but then as predicted my right eye started to droop. I was put on high-dose steroids, which helped, but then I had problems and had to go off. The strangest thing that helped was when I went on Ozempic for weight loss. Not only did my eyes open up, but my depression disappeared. My metabolic psychiatrist says that the GLP-1 drugs do seem to have positive neurological effects. When I had to stop Ozempic for surgery for a few weeks, my right eye began to droop again. I am seeing a new neurology resident, and she had me look up and hold my gaze for over a minute–she saw that my right eye pulls down after a minute, which she said confirmed Occular MG. I am just hoping that it does not progress to general MG, as I was told happens in the majority of cases.
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find a neurologist that specializes in MG. Many are located in University teaching hospitals. I was sent to the University of Miami (FL) to see an excellent specialist. I was lucky that the head of neurology in the hospital I went to when I had my original crisis was a MG specialist and he diagnosed me tight away.
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The URL for the MG Wallet Card is
https://myastheniagravis.org/wp-content/uploads/2024/04/ConquerMG_WalletCard_Download.pdf
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